Marcia Braden PhD
marciabraden.com

SUNDAY JULY 13 2025,  9:30 – 11:00 AM AEST      – LIVE ONLY EVENT

Dr Marcia Braden PhD is a licensed psychologist, known internationally for her expertise in understanding behaviours in Fragile X syndrome.  Dr Braden runs a clinical practice in Colorado in the US, has been involved in numerous research projects, and written a number of publications on Fragile X syndrome.

In this Live Only event Dr Braden is keen to address any questions families or caregivers have around the behaviours of a child with Fragile X syndrome in their care.   The focus of this session will be addressing support strategies for children up to the age of 13 who have Fragile X syndrome.

This event is run in collaboration with Fragile X New Zealand.

REGISTER HERE

Presenters include Katie Clapp, Co-Founder FRAXA Research Foundation

Moderated by Dr Claudine Kraan PhD, Murdoch Children’s Research Institute; Vice-Chair of FXAA’s Fragile X Scientific, Clinical and Research Committee

THURSDAY 17 JULY 2025, 8:00 – 9:30pm AEST

Presentations include:

• International research developments in early stage research and clinical trials exploring treatments for Fragile X syndrome.
  Presented by Katie Clapp,  Co-Founder FRAXA Research Foundation  in the US.
• Fragile X Care | Adults & Ageing – Update
  Cynthia Roberts, President of FXAA and Wendy Bruce will present an update on the research study being undertaken by FXAA and Centre for Disability Studies (affiliate of University of Sydney) to explore support needs and gaps of adults living with Fragile X syndrome.
• Supporting people with intellectual disability living with Dementia.
  Rachael Cvejic is a Senior Research Fellow at the National Centre of Excellence in Intellectual Disability Health, Faculty of Medicine & Health, UNSW Sydney. Rachael will talk about a new research program which aims to improve our understanding of the health and mental health needs of people with intellectual disability living with dementia. This includes a focus on supporting people with intellectual disability who are experiencing changed behaviours in the context of dementia.

• NurtureNextGen: Co-designing support for families navigating genetic neurodevelopmental diagnoses
  Dr Erin Turbitt and Lizzie Callinan from the University of Technology Sydney will introduce NurtureNextGen, their research project focused on improving the diagnosis experience of parents and caregivers of children with genetic neurodevelopmental conditions. This study aims to co-design a digital tool that delivers strengths-based, balanced information shaped by real family experiences. They will share plans for arts-based workshops aimed at capturing diverse perspectives, and how the Fragile X community can get involved in shaping a resource that supports families during a critical time of diagnosis and adjustment.
• Epi-Genomic Newborn screening program
  Associate Professor David Godler from Murdoch Children’s Research Institute will talk about the EpiGNS program which will examine if conditions linked to intellectual disability, autism, severe obesity and seizures can be identified as part of the heel prick test performed in the first year of life of 100,000 Victorian infants. the EpiGNs program will use a new approach to identify changes in the activity of genes. This will help us to detect developmental conditions including Fragile X, Prader Willi, Angelman, Dup15q, Turner and other syndromes.

REGISTER HERE

Jaquie Mills
Managing Director, Microboards Australia  

TUESDAY 26 AUGUST 2025, 7:30 pm AEST

Jaquie Mills established Microboards Australia in 2008. Since then she has been a strong advocate for people with a disability. Jaquie also consults to disability leaders and advocated for the rights of people with a disability.

This session will cover the role of Microboards in supporting the future for a person with disability, and how to establish a Microboard for a family member.

REGISTER HERE